Endo symptoms - no luck

[Lyz1224]

Hello all. I just thought I would pop a post on here as I feel I might have Endometriosis but I am having no luck with my GP actually helping me with my problem and I am hoping to receive some advice / support here. I have been suffering from irregular bleeding for quite some time - however - being on the injection (contraceptive) I understand this causes problems with periods. I find sex very painful at times and some positions are just a no go! I am now experiencing pain constantly in my lower stomach and lower back, especially if I have eaten a lot or if I need to go to the toilet

My husband has also commented that I seem quite depressed - (I haven't wanted to mention it - but I have been feeling very down and lathargic) which is very unlike me as I am a very outgoing and active person. I have also in the past three weeks had very bad hip pain - almost like siatica and this occurs when I have been sat down for about 15-30 minutes. I am a massage therapist so understand all my muscles and ligaments but the exercises I do for siatica don't seem to be helping.

I have been to the doctors with this problems 10 times in the past 4 months, my smear and STI checks came back negative..so they could rule them out. In January - I had a 5 week period, as my GP put it 'you were probably spotting' - unfortunately I was wearing tampons and pads for 5 weeks!! (Thats a lot of spotting to me!)

In April me and my husband had sex and afterwards I bled a few blood clots - about four - some were the size of a 5p coin, and one was about the size of a £2 coin. After this - for three days I was in constant pain in my lower stomach and ever since then I have had some sort of pain that is always lurking. It have bled after sex for about a year, but never had blood clots before this.

I went for a ultrasound yesterday at my local hospital - both external and internal. When she did the external ultrasound I was in a lot of pain - whether or not that was because I was close to bursting my bladder I am not sure but I found it hugely uncomfortable. When I had to go and empty my bladder for the internal I noticed I was bleeding...I mentioned this to the radiographer but she didn't say anything, I also found the internal quite painful but not as much as when I had my smear.

To cut a long story short - they found nothing - I broke down on the couch because all my tests are coming back negative - which is a good thing I know as I can obviously cross out ovarian cancer etc. But I am so frustrated that I am not getting any answers. I left the hospital crying my eyes out as I honestly thought I would get some sort of answer.

Can anyone here possibly advise me on what to do next as I know when I go to my GP and tell her they found nothing on my ultrasound scan she is probably going to say 'Some women just have to live with bleeding and pain' (she said that to me before which hugely irratated me - no woman or man should have to put up with this pain)

I thank-you in advance for your replies.

Lyz

[merlin19]

Hi,

I don't have the bleeding problems but apart from that my story is very similar, I've had all the tests/scans etc and they found nothing apart form being diagnosed with IBS for the past 5/6 years, but so many of the symptoms couldn't be explained by this. The past year or so sex has been getting more uncomfortable and painful and is causing real problems with my relationship, so going back to the doctor numerous times with no luck they finally referred me to gynae at local hospital where they said because everything else has been ruled out they will try a lap for an endo diagnosis. It took a few different doctors to get there, so maybe you could try changing doctors? I don't know how your surgery works, but I don't have to stick to just one GP so I saw a couple and then stuck with the one that was most helpful! I've really found that the younger doctors are more helpful with this condition/these types of symptoms, I guess the recent advances in knowledge of it have been part of their training where it wouldn't have been for older doctors unless they've taken on extra training. I really feel your frustration, but do try to be patient and keep trying, and ask for a referral to get a diagnostic lap done, at least then you have a chance of knowing either way.

Best of luck! xx

[Lyz1224]

Hi Merlin19,

Thank you ever so much for your reply. I have seen many GPs as with my surgery you know longer have a 'family doctor' so you see whoever is available!

It's awful when it starts effecting your relationship as it is mine, especially when we are newly weds !

I am going to go back to the GPs next week and push for another scan. I have started to keep a symptoms diary so hopefully can show the doctors how bad it is getting.

Thankyou again xx

[merlin19]

I think a symptom diary would be really helpful, I once went with a long list of symptoms to present to them, rather than trying to remember to mention everything! I did find that when I started to say what a bad effect it was having at home they seemed to take more notice, maybe thinking 'she's not just moaning about pain, there's a whole lot of other issues developing here, perhaps we should do something'! I also got a referral to a cognitive behaviour therapy group to help deal with it all, which I don't know how much it will help, but is helping to take my mind off the wait to hear from the hospital about my lap! I really hope that you get some positive reactions from the GPs soon, and that things are going as well as they can be with your husband! Best of luck, and keep us posted! x

[Lyz1224]

Thanks Merlin, I have updated my diary today and started to realise I may not be telling the GP as much as I should - just because I don't remember so the diary is hopefully going to be very helpful. xx

[louise05]

Hi Lyz,

I didn't get anywhere for about 6 months with the GP - they did the same swabs on me four times! Eventually they referred me but it was a 6 week wait. I was in so much pain i paid for a private consultation but it move things forward considerably - would this be something you could do? I had a transvaginal ultrasound but they too didn't find anything, however because I was in so much pain when she put the speculum it she suspects endometreosis or adhesions/scar tissue and booked me in for a laporoscopy. Unfortunately because I had to go back on the NHS (£4,500 privately!!!) it isn't until the end of July, but any progressive feels good at this point. My symptoms are a little different to yours (I don't have any bad bleeding but I'm on the injection too so spot irregularly) it is just the pain really. The doctor's don't seem to see any urgency about getting seen ASAP for the keyhole surgery when it comes to it potentially being endometreosis, which initially made me feel better as though it can't be anything serious in that case, but it really is the pain which is the worse part and the frustration of the unknown!!

If you can go private I'd really reccommend it - I paid a total of £375 for a consultation and a transvaginal ultrasound, which is crazy money but for me the relief of knowing I will have to laporoscopy was worth it. You aren't having these problems for no reason and I think when you get to a specialist they're going to want to get to the bottom of it x

[Lyz1224]

Hi Louise, first of all thankyou x I had the transvaginal ultrasound yesterday and they said they couldn't see anything - but endometriosis sometimes doesn't show. The radiographer said she couldn't tell me what to do next as she wasn't a doctor however because of my symptoms I should go back to the GP. I just wondered with all my symptoms what else it could be, I don't want to diagnose myself but when you see the symptoms relating to everything you have obviously you start to think. I just hope my GP will listen to me this time because I feel so alone.

Thank you again xxx

[Lyz1224]

Another thing I have noticed, I have been bloated for the past few weeks..is this a sign of endo? X

[louise05]

Yes the transvaginal ultrasound usually won't show anything, I was relieved when mine was clear too but it is so frustrating because you think how can this thing that's hurting me so bad not be obvious?! But luckily I got straight in for the laporoscopy - I think this is the route you need to go down, to be honest I think I've learnt that persistence is a good option, tell your GP you have done your research and although, as you say and they will appreciate, you don't want to speculate or diagnose yourself, you are really worried about your symptoms. It really is worth trying to get in touch with a specialist in your area, or at least a women's health specialist GP (this is how I got my foot in) I have heard that endometreosis and adhesions can cause the bloating as it can be the infection, but hopefully someone else will be able to tell you more about it as I'm not sure. Really hope you get somewhere with this x

[Hidden]

Hello.

I am sorry to hear you are having problems.

I am glad you had scans. These are good at detecting ovarian cysts and tumours. Scans will show some endometriomas on the ovary (these are blood filled cysts caused by endometriosis) and sometimes other areas of endometriosis that are very large. Otherwise, scans can not determine if you have Endo or not.

I'm afraid you have to go back to your GP and insist on a referral to a gynaecologist. Don't take NO for an answer. If necessary take your husband in with you for support,

I have had Endo since 1991 and have been lucky to have three children. Unfortunately I have encountered numerous doctors and nurses (I am a former nurse) who show no empathy or compassion for the people they see. So I have become an informed and "assertive" patient.

Bloating after eating can be a

symptom of Endo (especially during your period) but can also be due to a number of other conditions.

You really do need to be seen by a specialist who can take a history and look at your symptom diary. You may have endometriosis and this needs to be looked at thoroughly. To diagnose or exclude endometriosis, you need to undergo a laparoscopy.

I wish you all the best.

Barbara x

[Lyz1224 in reply to Hidden]

Thankyou. Just getting feedback is helpful..it makes me feel less alone! After eating or drinking I have started to notice bloating and my husband has mentioned it a couple of times. I am going to book a docs appt tomorrow and be more assertive. It really is becoming unbearable and when me and my husband are wanting to start a family, Its awful not knowing where to turn. Sadly for the past couple of years I have gone to the gp with different symptoms they have always blamed it on my weight..im only 7st 9lbs but I eat like a horse..its in my family genes..but docs have always blamed irregular bleeding and other symptoms on that thankyou so much for your replies..i just hope I get to the bottom of this because not knowing is most of the problem at the moment xx

[crieff93]

Stand your ground! I was suffering from pain in lower abdo/pelvis and painful sex for months before I got anywhere!

Similarly I had every test going and all came back negative, I Had been seen by numerous specialists who all dismissed my symptoms saying there was nothing they could do. Eventually I got seen by a gynaecologist (after loads of GP appointments!) who also didn't really know what to do.

After 9 months of being fobbed off by healthcare professionals I was finally on the waiting list for a diagnostic laparoscopy but told they probably wouldn't find anything and I would be discharged. Even on the morning of my surgery it didn't seem like they thought there was any point because they weren't going to find anything.

After almost 12 months of pain everyday I finally got diagnosed with endometriosis. It's such a relief as I began to think I had imagined it all and there wasn't really anything wrong with me!

You know your body better than anyone else - ask for a referral to see a specialist gynaecologist who deals with endo specifically and see what they can do.

Hang in in there! Good luck, Hugs xx

[Lyz1224]

Well I rung the doctors last week to see a GP who has a special interest in Gyno..great news, bad news is they can't see me for another 2 weeks So currently putting up with the pain as I refuse to take painkillers everyday - painkillers only numb the pain and its not safe to take them everyday Lets just hope I get some sort of news when I go back.